We took another road trip this week - to Steelers Country. As if I care about football. I don't, but that's a shout out to Uncle Peter.
So we went to see Dr. Christine Roman-Lantzy, who is one of the few experts in Cortical Vision Impairment (CVI). She actually wrote the book. I made this appointment in September so needless to say, I was very excited to finally meet her.
Josie was diagnosed with CVI at around 9 months. It's actually amazing to me that the first opthamalogist we went to did tell me it's her brain and not her "vision" (the structure of her eyes are fine), but she never told me about CVI. The second opthamologist handed me a one-pager with the definition of CVI, but never discussed the importance of tackling it immediately with CVI-specific vision therapy. The next two eye doctors had nothing CVI-specific to tell me either. The fact is that a child with CVI has a great chance of overcoming most of the challenges if they engage in the correct methods of vision therapy early on. CVI happens when the vision center in the brain is injured and the eyes and brian are not communicating properly. Here is a great description of CVI: http://www.littlebearsees.org/what-is-cvi/
Dr. Roman did Josie's CVI assessment to see where she falls on the CVI scale. We were all happy to learn that she's at a level 5 (1 is the worst and 10 is normal vision). She also reported that Josie is in phase 2 of the 3 phases of CVI - She's advanced through phase 1 (little fighter). I explained that when we finally got our vision therapist, Joanne, I told her that we can't treat Josie as a "low vision" case and we have to follow the guidelines of CVI therapy. Joanne immediately got Dr. Roman's book and did just that. It's made a huge difference already. Dr. Roman gave me props for that call :). Her husband who is an MD and was present for our appointment actually asked if I'm a Dr. after I explained Josie's story. That was nice to hear; this has been quite the education!
Dr. Roman reiterated a lot of what we already learned from her book and she gave us a ton of great information for continued therapy. She demonstrated what Josie can and cannot see and from what angels and distances. She reinforced what to use as therapy to help stimulate the vision center of her brain. This is the key: humans have brain plasticity and the younger you are, the more brain plasticity you have. So the more we work to USE the area of her brain that has been injured, the more likely we are to help repair it.
A few examples of what helps stimulate Josie's brain:
- bright colored objects against a solid background
- Shiny objects, with movement and/or lights against a solid background
When she put a gold beaded necklace on a patterned tablecloth, Josie couldn't find the necklace, but when she put that same shiny bright gold beaded necklace on a black felt board, Josie looked at it and reached for it.
There's a lot more to CVI - things like visual latency and complexity to name a few. The goal is that we work on each area and in time, Josie's CVI score will move closer to a 10. We'll see Dr. Roman again in one year.
I felt really good after this appointment. One reason is that Dr. Roman pointed out how impressed she was by "Josie's will." She said it's so clear, and not so common to see, how much Josie wants to engage in activity. And she is engaging. I also felt good because I feel that this is something we have under control. We know what Josie is dealing with; we know how to treat it; it makes sense; we are working with the best; we're seeing the therapy make a difference; we know that with therapy she has a great chance of getting much better; and I am certain she has the will.
**Music reference: "I See You" is a track off the new self-titled Caveman album. I love this album and the band and I'm actually going to see them at an album release party in Williamsburg tomorrow night!
Lil Jojo following the light with Dr. Christine Roman-Lantzy
We are super serious about this light box activity.
Bad picture, I know. The point: When we left Dr. Hao in New Mexico the song "Josie" came on and when we left Dr. Roman in Pittsburg, the song "Jojo" came on. Now is it getting weird?
Ok so you caught Miss indie-head listening to good ol' American classic music. We just get in the mood to hear artists like Van Morrison and Jackson Browne on road trips.
But not for too long.. I kept hoping to hear this new song by Vampire Weekend. I really like it. Just thought I'd share that.